Accessing data

IDDO promotes the use of shared data to generate new evidence that improves health and understanding of the diseases we focus on. Researchers can access data by making a request to the governance mechanism selected by the research community that generate the data. Details of how to make a request are available on the pages of each research theme.

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Data producers will be able to stipulate the level of access to their data, including allowing requests for access to be decided by a DAC.

Each DAC will be responsible for agreeing the Terms of Access, and for agreeing the details of the Data Access Agreement that must be signed by anyone whose request for data is considered favourably.

Each DAC will have responsibility for considering and deciding on applications for data access, evaluating whether access requests are consistent with the terms and limitations of the dataset(s) stipulated by the submitting investigators. The DAC will also have responsibility for ensuring that the requests do not conflict with the interests of research participants involved in the trial(s).

The Data Access Committees will meet regularly, based on the volume of data access requests, via teleconference and/or in person. In addition to considering applications for access to data, they may also discuss emerging issues in relation to data access.